I was going to title this post "so many answers" as a sarcastic response to our appointment this week, but I didn't want to get anyone too excited (:
Evie's pulmonology appointment this week went okay. She has been super sick with an upper respiratory virus for about two weeks so it was a good time to see the Lung doctor. He doesn't think that the breathing issues that Evie is having during her seizures is a lung problem and has recommended that we see a cardiologist. We are waiting to hear from their office. He thinks that if she is having abnormal heart rhythms while she is seizing that may be why her oxygen saturations drop so quickly. We did a quick EKG at his office so we have a baseline for future reference.
Eve has been coughing, gagging, and fevering for about 10 to 14 days, hence my lack of blogging. I feel really bad for her. She is slowly getting better as some new steroids kick in and help open up her airways. When she's sick she prefers to sleep with John and I, needless to say we are all a little tired (: Someday maybe Evie's geneticist, pediatrician, pulmonologist, neurologist, neurosurgeon, plastic surgeon, orthopedic surgeon, opthamologist, ENT, (soon-to-be cardiologist), physical therapist, occupational therapist, speech therapist, and services coordinator can all get together and figure out the mystery that is Evie (: Actually, that would take away the pure joy we have at watching her grow into her own little self every day.
Thanks for loving us and checking in. Hopefully I will be back with good news of good health very soon!